3.30.2009

For the past week, I have been very consistant and sequential about naptime. We were having a horrid time getting DS to stay in the bed long enough to fall asleep. Poor little guy just could NOT wind down. I could no longer (with a good conscience) give him chocolate milk and new CD stories to get him sleepy enough to eventually die out. All along, I think he needed a little sensory integration help & the suggestions have helped Tremendously.

Push or carry heavy toys for a few minutes

Eat Lunch with Mr. Wiggles (new air seat cushion)

Read books Sitting in bed

Tell Mr. Frog, Gregory, Curious George, and Baby Doll that it is time for Nap

Tell DS it is time for Nap

Lay down under heavy blanket

Glorious sleeeeeeeeeeeeeeeeeeeeeep!

So, today, we head to DS's room and I say 'Mr. Frog, are you ready for stories?'

DS responds (looking directly in their eyes):

"Gregory, it's time for read books, OK?"

"Curious George, it's time for read books, OK?"

"Baby Doll, it's time for read books, OK?"

When we finished up reading, he knew exactly what was to come next.

[DS in quotes]

"Mommy's turn"I took Mr. Frog and put him to bed.

"Gregory" (we have to do them in the same order)"It's time for nap-nap. Lay down. Blanket on. No-no getting up. No-no playing. No-no jumping. Night Night. *kiss* "

Then DS turns to me with the biggest grin on his face, ready for me to tell him the same thing. I go through the whole thing with him & he nods his head just like I do with the animals as I have them answer me.

3.27.2009

All I have to say is that my 72 hour journey into the world of Hyperlexia - the one I wasn't even LOOKING for - has taken me on this crazed trip of finding answers and direction to just about EVERY SINGLE question I have had over the past 10 months. Every evaluation I thought should have been done. Every 'should I take him to this doctor' or not. Every 'gee why do they battle so hard against his diagnosis'...........Every he is so awesome....

Thank you, Lord, for this trip.

My mind is about as clear as a big bowl of mush from information overload.

But I know that God has provided me with what I needed right now.

I couldn't even keep reading tonight because of the abundance of blessing. He certainly did let it OVERFLOW in this situation. Hallelujah!

3.25.2009

I came across a special needs resource center recently with a lending library. I called them up, got a couple of books in the mail the next day and set about reading.

One of my current reads is 'Reading too Soon' by Miller.

Page 1 might as well be DS's Biography.

Hyperlexia is not a recognised disorder in and of itself & I don't really know why but there is very little literature out there. My hunch is that there are a group of children that present in this very similar way, but that it is so tied into the Autism Spectrum that it doesn't really deserve to be set apart. Just my hunch.

It hilighted that these hyperlexic children usually begin to recognize letters and numbers between the ages of 18 months and 2 years. Spontaneously, coming out of nowhere they begin to read words before the age of 5. Most of them are reading by the age of 4 - but the intense love of numbers and letters comes well before that.

Well, last night after reading a few chapters, i had the opportunity to go to an event for

moms of children on the autism spectrum. The room was filled with these moms along with five professionals. I was intrigued to find out that the woman sitting next to me has a son only one month younger than my own. And he is a 'reader' too. We didn't have a huge amount of time to chat, but her son has a reading vocab. of about 50 words. It is extremely amazing to me for children of this age to read, but even SHE was blown away by the extent to which my DS reads (and that made me feel bad, not sure why, except I didn't like the way that felt). I would have never walked into a room like that and announced my child's abilities - but RON made a point of telling everyone 'This is DS mom, he's the one who reads and memorizes 53 song CD's' etc... [Thanks Ron...]

People just can't get over the 2 year old who can read them a book.

Yet, when we pass by 'On the Border' or 'Right turn only'. I am nearly oblivious to the little voice in the back seat reading all the signs.

I say this to just pose the thought in my head. How many children who are 'on the spectrum' AND have this thing called Hyperlexia are reading 76 page kid books before bed at 2 1/2 years old? How many kids in general can do that? How rare is this thing happening in our house? Our first video of him reading a book was on 9/20 last year. That was 6 months ago!!!! What?

If I sound a little braggy in this post - eh - that's ok. I need that every now and then :-)

I'm learning things about Hyperlexia that are really intriguing - about how they process language etc.. The most encouraging thing I've read so far is that some of the children lost many of their autistic traits by the age of 10-12. It seemed that most of the behavioral challenges were directly related to the communication/understanding deficits.

Tammy came today with the 'Disco' seat, wiggle seat, whatever you want to call it. It was no big deal for me to call her and request it and have her schedule a time to come out. It seemed to work well at lunch/dinner today. He still fidgeted, but when I also mixed in some deep pressure through his shoulders/elbows/wrist, he seemed to calm down even more for us. He almost seems to MELT into anything with deep pressure. I'd say that's the sign I've been looking for.

Also, when she came, she was supposed to bring his OT evaluation from August.

There's not one.

She called the company that worked with us previously to request it, but they have not gotten back to her yet....... The sad part is, I am not even surprised. However, if they can't produce something, I will be requesting a new OT evaluation. End of Story.

.........................................................

Jen's visit today was really good. She worked on one task with DS and then we talked the rest of the time. I got out a lot of stuff that I feel like we haven't discussed & I think the timing of it was good as well. [Again] She told me that she feels like he is caught up & in other cases she would be ready to discharge, but recognises 2 things. 1- it will be harder to get services again after being discharged and 2-she knows that he will fall short again soon without SLP help. Not with making sentences, etc.. but social/emotional.

I agreed 100%.

I also made note that DS does things for her that do not translate over to his 'real world experience'. I told her that SHE is a prompt for him. He asks questions for her - for her books - for her cars.... and he will ask questions around the house as well - but it is all so learned and rote. I know, I know, it starts that way when its emerging...

I also told her about the reading I've done over the past couple days on Hyperlexia (more to come on that in a few) & asked her if she had ever read up on that subject. I feel like there are things pertaining to language development that might involve her having a more detailed understanding of how his early reading can impact his language development. One being the amazing amounts of things that can be memorized & spit back out as big chunks (looks rote) instead of REALLY being learned.

At the same time we were talking, DS and DD were bouncing around the room playing and getting into whatever their hearts desired. DS decided he wanted to 'play with mommy and plashpluh....' which ended up translating into 'flashlight'.

Upon witnessing something more mundane and the opposite of structured play - Jen decided that she wanted to cut out our structure play time (oh God thank you! I was so afraid she was going to bring up 1x/month visits again) and just come without her toys. So, next week, she is coming without her gaggy bag of stuff & wants to participate in whatever activities just HAPPEN.

Also, we are looking to find a place for her to observe DS that would show his interaction with peers, opportunities to communicate, demands being placed, etc... Because she (and I) think that his next set of issues are going to be in direct relation to being in a setting where he needs to interact with peers and meet demands placed on him. Whether that be just understanding what a teacher is requesting, or stopping color time, or sit in the chair..... you know... preschool stuff.

Anyone reading this blog ever needed to do that before? Suggestions?

In the end, it was a great conversation. I do not agree that he is all caught up & am working on finishing my list of concerns (that I started a couple weeks ago) that we can still address at his tender age of 2 years and 8 months. We still have more than 3 months with EI. We have come SO far. He said an 11 word sentence for her today. Oh My! Who would have thought. BOTH our jaws dropped as I counted the words that came out of that precious boys mouth.... I think we still have some things that can improve over the next few months. My expectations will never quit, but will ALWAYS be blasted out of the water with this amazing child.

...........................................................

I'm on an emotional roller coaster today. There's really not a reason - nothing has happened that much different than usual - just if you think of me today stop and say a little prayer. Everybody deserves a good cry once in a while....

3.22.2009

I've had this growing stack of papers all pertaining to DS in some way that has traveled from place to place around the office. Too new to have a place. Too needed to be filed away. Too daunting to do something about.

Anyway, I managed to sort through the stack on Saturday and at least sort it into a manageable set of information. I ran across his IFSP & decided to take a gander at the professional lingo that described my son when he was 23 months old. In bold Black and White 'Consistant with a diagnosis of Autism' still has a shock value. However, that's not what I'm fixated on tonight.

Right under the 'Sensory Observation' section it states 'OT evaluation is recommended to further address his sensory processing skills due to qualitative differences.'

So, that proves-- There was not an OT evaluation at our initial diagnosis appointment.

Raises the question-- Does what Kitty did with him back in August count as an official evaluation? Because it wasn't any sort of standardized test to my knowledge - and if my mind serves me - I beleive she even called it 'informal'.

And brings upon action-- I will be calling Tammy on Monday to get a copy of the OT evauation that is supposedly on record, and thus stopping him from the availability of another eval within the year.

I think that something got swept under my radar while I was on watch. Easy to do when you don't fully understand something. But this might work to our advantage....stay tuned...

3.21.2009

When I focus my blog posts on our current subject matter of figuring out what our OT needs are, therapist comments, etc... our life seems all too dreary and dull. Especially as of recent, the blog is not a good portrait of our lives as a whole - so I will invite you to something a bit more telling...

The Museum

When I was growing up, kid's museums were all so 'sciency'. That is great for kids who are either ~8 years old or into that stuff, but I was always kinda bored. So, I had not put any thought into the local children's museum, knowing that the Natural Science, Art & History museum trips have been a bit on the sleepy side for us.

I'm a sucker for a freebie, so when I found out they were doing Story time and Free Admission one afternoon this week, we headed out on an adventure.

It was perfect! Everything in the whole place was to encourage children in imaginative play. Everything scaled down to child size, yet bigger than anyone could ever have in their home - there was an ambulance, firetruck, hospital, kitchen, grocery store, ball pit, dress up stage, train set, lego forts....you get the point.

Both kids LOVED it.

We parked in space #63, which DS reminded me of often. He held my hand like a big boy all the way in. Had a hard time in the line to get in, but that's ok... Storytime lasted less than 10 minutes because he wanted to sit IN the book and read the words. But that just gave us more time to play!!

His favorite ended up being the ball pit, which thouroughly surprised me! He loves slides, and you slide into the ball pit, but I didn't know what he'd do once he was in. Until he wriggled himself all the way over to the other side and slid back out, I was ready to jump in and save him. But, he did great! And, then there was no getting him back out :-)

Baby sis' favorite was running away from mommy. Around the corner from the lego fort area was 'Real Tools' (duely named; saws, hammers, wood..) - so i was being cautious neither of them went that direction. But, Baby sis thought it would be MORE fun to grab the legos and make a RUN for it! Her other favorite was driving everything - the convertible, the ambulance, the mail truck... DS sat either in the passenger seat or back seat while she 'drove'. Is this imagery I will remember in a few years? I think so.

Mom's favorite was the lack of batteries, cords, buttons, noises, stop-dont-do-that's, and the ELEVATOR - which would stop any unwarranted behavior at the slightest mention...

I absolutely LOVED that the only noise in the whole place was light instrumental music and the sound of kids playing.

It was exhausting chasing them in different directions, or holding Baby Sis while DS ran toward something else, but that's not a complaint - just a matter of fact. I would love for Dad to go next time so we can really let the kids dig into whatever it is that meets their fancy that day.

Good day. Good imaginary play. Good words. Good following direction. Just plain ol' good.

I will remind you that my plan this week was to sit back and observe what AMY does instead of making a lot of interjections and asking questions. I have had a lot of questions over the past two weeks, because she is new...

Within 3 minutes she annoyed me.

She came in [late] and asked me how the week had been & if any of the suggestions had

helped. I told her the distraction of something in his hands, or changing the marching to carrying were all working well. And, I told her I felt like the 'beach ball in the chair' for mealtime could work, but we always have to get it just right and more often than not, he wants it out. But I have seen it work.

I told her that the SLP wanted to know what new things we are working on & when I mentioned the beach ball, she told me the EI center has a whole closet of things to check out, one of which are all different types of 'wiggle seats'. And that I thought one of those might work better for him.

Amy's response: "I don't go to the CDSA. The Beach Ball is the same thing, just cheaper."

Seriously??!!

I tried again... I told her that I was under the impression that what could be checked out at the CDSA would be free, and that the beach ball kind of crushes under him instead of giving him any buoyancy.

Amy's response: "The beach ball is

the same thing. That's what it's supposed to do. I don't go to the CDSA."

Seriously??!!

I dropped it. I was baffled and annoyed. I got REAL quiet, because I was put off and not quite sure what to do with such blatant refusal.

About 20 min's after our 'conversation' ended, she comes out with 'Do you ever talk to Tammy (our Service Coordinator)? Maybe you should call her to see if she can get you one of those seats.'

Another 20 min's pass and she tells me that she has a headache. Ok, I have bad headaches sometimes... they can certainly make me crabby. It was duely noted, but didn't take back any part of the crushing blow to my impression of her: Disappointed.

..................................................................

What we DID do:

She seemed to be in a kind of 'assesment' mode for fine motor today:

She let DS color and asked him to color on different parts of the paper; mastered.

Asked DS to copy shapes such as 'S', square, and then a couple abstracts; mastered.

Asked DS to copy shape patterns with them touching, such as Square w/circle touching the bottom corner; mastered.

Drew a stick figure and asked DS to draw eyes, nose, mouth, hands, feet, hair, ears..etc.. on the body; mastered to a 4-6 year old skill level.

Gave DS an assortment of blocks and asked him to copy a straight tower and a few other structures that she made; mastered.

Showed DS a structure, knocked it over and asked DS to rebuild it; mastered

I sat in amazement. I knew he could do SOME of it, but not all. I knew his memorization skills were helping, but I was MOST amazed that when he copied her structures, he didn't match the colors of the blocks to the same as what she used. I would have expected that of him. I take that as a GOOD thing, he wasn't so rigid in the task that he needed it to be perfectly matched.

Then we moved on to socks on, shoes on, and outside to play ball. She continued working with his ball catching and kicking. She assesed his skills going down and back up the stairs outside, and then we were back in to take shoes and socks off.

Back inside, she did a wheelbarrow crawl and 'bear' crawl with him to improve his shoulder muscles and input. She also wants us to use these are distractions when he gets to marching, twirling hair, and singing his ditty.

Then she told us that a class she works with in preschool are JUST starting with helping the kids put on Jackets. And that working on even getting a shirt on is more of a 4 year old skill, that she would not emphasise that right now, as it is developmentally out of his league.

3.17.2009

All sides agree that all DD's reflux issues are gone and we can move away from any medication/testing/treatment for GERD (reflux). If we notice any change in the next 3 months, she will want to do a Barium study and Endoscopy. I do not think that will happen.

In that respect, I liked Dr. GI.

However, we were ushered into this CHILDREN's HOSPITAL satellite office 'room' that had 10,000 buttons/dials, and NO door to boot. DS was in button & machine heaven. Mom was in total misery and there was nowhere to undress Baby Sis. So, I was left to undress, help weigh, help measure & keep DS from breaking all the gadgets at the same time. Of course, we were in a new place and his ears were closed to any instruction I was waisting my breath on.

In my huffy voice (that I hate and try SO SO hard to stay away from using), I said 'Is there a room we can go to soon? He's having a really hard time.' She said yes, and I asked her to please tell me what number it was. #8. Ahhhh..... 'DS, we are going to room #8. See if you can find it. I need you to listen to mommy. We are going to go in and sit down and Dr.GI is going to look at Baby sis.' (blah..blah..blah... you get the point).

Well, DS listened as long as it took him to find door #8. After that, I might as well have had a bouncing, spinning, chattering TIGGER on my hands. I think he settled on singing the calendar for about 10 minutes at one point, as LOUD as he could.

Anyway.... Dr.GI finally came and disregarded the fact that I was having a hard time keeping DS under control. But then, she says 'Baby Sis (but her real name), Baby sis, Baby sis......... Baby sis. WOW - you won't look at me at all. You just don't like looking people in the eyes do you? Oh, wow, look at me, I'm over here... Baby sis, Baby sis, Baby sis....'

GROWWWWLLLL....errrrrrrrrrrr

I really need not explain why it turned me into a growling Mother Lion....

I wasn't sure why she was making such a big deal - but I've never questioned Baby sis in the least - and whether she meant it or not.... I just wanted to grab my cubs and go.

....................................................................

I'm the first to admit how imperfect I am. These are the situations, the ones that I have no control where I #1 realise how dependant I should be on God for my peace in every situation and #2 let my emotions get the best of me and let my witness go by the wayside. My energy was wasted on this trip - I am drained at this very moment to the point in which I just want to go lay down. However, I am not without Hope. I pray God will give me another day (although I am not promised one) and that I will seek HIS strength better tomorrow.

1 My soul finds rest in God alone;

my salvation comes from him.

5 Find rest, O my soul, in God alone;

my hope comes from him.

8 Trust in him at all times, O people;

pour out your hearts to him,

for God is our refuge.

Psalm 62:1..5..8

Always talking about needing a 'breath' or a rest, I am very comforted by the fact that God knows I will need hope...and rest...and refuge. He knows how imperfect I am and JUST what I need WHEN I need it.

I've noticed that DS has actually started to ASK some questions. This is a HUGE event because I had no idea how long it would take us to get here. They are still squeaky, shaky, and fairly planned out.... but it's amazing.

I think he has noticed everytime I say 'Thank you for asking a question' and has built on that praise a want to do more.

'Are you reading your Bible, Mommy?' he says to me this morning.

Yes, I am. Thank you for asking a question!

'Are you over?' (meaning over the other side of the gate)

I am over this side of the gate. Good question.

'Are you drinking Coffee?'

Yes, I'm drinking Mommy's coffee.

I see him adding 'are you' to the beginning of a lot of things that began as a one word prompt and have slowly been added to..... Certainly a great show of learning on his part.

3.12.2009

Our second OT session went really well. I am still in the process of getting some more materials to understand how this puzzle piece couldfit for DS... but so far I am very pleased. I have read a portion of 'The Out of Sync Child' and intend to read it in it's entirety very soon. I think it will answer a LOT of unanswered questions I have had thus far. I am going from thinking my son has 'very mild sensory issues' to realizing that I didn't even know there were all these different sensory systems in the body. And - I blogged about 'Vestibular Dysfunction', but from what I have read so far, it goes far beyond that.

Not being the type to jump on board with something so quickly, I am hesitant to think 'This is It'. However, not since the Hyperlexia article I read..... have I read something that describes DS in such a clear cut way. !Proceed with Caution!

I am really struggling to keep my 'why didn't they....' under wraps for now because I know that he is ONLY 2 1/2 & he IS doing so well. Maybe now is just the right time for HIM. Maybe it would have been too overwhelming to do everything at one time. God's timing is perfect...

So, in the session itself, when we brought up our issues with Amy - she just grabbed hold and listened and started rattling off suggestions. She never really said yes or no to whether she thought Sensory Processing/Vestibular/Proprioceptive etc.... is an issue for him, which was odd. But, we also have to give her a learning curve to understand how she does things.

I am hoping for a calmer session this week that I have less questions, and I can sit back and watch how she does things without all of my interjections.

The ideas rattled off the top of Amy's head to help with the issues discussed:

Help with calming before naptime/bedtime

-Joint/body pressure before bed

-Heavy quilt. Use pillows on his body to apply pressure after under covers. Call it 'Curious George's cave' or something to make it playful.

-Rethink music - a lot of children cant handle music/re-stimulates them.

Help with calming overstimulation

-distract a stim, don't call attention. e.g. Give him a task while marching.

'Carry this heavy bucket' - wait 15 seconds - and ask again. Let him march. Don't take that regulation away from him, but make it more appropriate.

-Don't talk about the behavior you are taking away - instead, if we want his hands out of his hair, put a heavy ball in his hands or ask him to use two hands on a task.

Help with fidget/attention at mealtime

-Heavy fork/spoon

-Slightly inflated beachball in seat to allow movement

Help with FEELING the sensory imput

-Help him swing on trapese bar- hold shoulders, bounce him to the ground when done to get information from his hips/knees/ankles of where he is in space.

-While swinging, have him kick in and out and allow him to kick my hands on his way up.

Help with Bi-lateral Coordination

-Require 2 hands to be used on as many tasks as possible. '2 hands', or 'both hands' VERBAL prompt only

3.10.2009

This blogger left a question about 'vestibular & proprioceptive'function. I didn't know what the heck she was talking about, looked it up, and I was still confused. I just rested on the knowledge that we had the eval and surely the OT would have looked at all areas.

Well, as I know all too well now, they didn't. For whatever reason we were mostly stuck working on Tactile function, which is a mild if even notable issue with my little one. So, we moved on (after way too long, but that's ok) to a new OT. Last week, I blogged about that experience and how I was disappointed in not getting a formal Evaluation. New OT didn't do an informal eval. either, though she did ask some questions and allowed me to interject questions.

Then today happened.

DS was out of routine. We had friends over several times over the weekend (including twin 2 year olds & a baby), missed both sessions on Monday, and then a friend came over to play this morning. DS started retreating from the action on day 3 of friends over. Monday he was overstimulated and out of sorts as the day started. This morning he started the day overstimulated (uh, when he got up he refused to stop counting until he had counted from 400-0 backwards). Then an unexpected guest came for a short play & DS all but IGNORED his presence the entire time (it was a fellow 2 year old). Not to mention Daylight Savings.....

And then it was time for Suzanne.

Our session was pretty good to start. DS and Baby Sis played with the Magnadoodle while we talked about the week. Nothing huge, but nap time has been going better. Then the attention focused on DS. He didn't want ANY PART of taking instruction from her today. The simplest of things sent him running to the next room, grunting, tantruming... She would stop the request, go after him, try to regain some trust with him, give him a few minutes of uninterrupted play and then try another request. He was NOT having it. She says to me 'I've never seen this before, is this normal? I can't believe he's behaving this way, he's always so good'...

Then it happened. What I see EVERY day when DS gets overstimulated. What none of the others get to see because they are so loved and new and part of the routine....... what no-one will listen to me about...

He started his circle around us.... boop-a-dop-da-deee-dop-da-doo...writing in the air...twirling the hair... NON-STOP. We went back to discussion and he got MORE wound up and MORE wound up and MORE wound up.

She says to me 'This is concerning. Most kids would be exhausted by this type of movement. but he seems to be getting more out of whack as he goes. I'd say he's at a 100 right now and I don't know how he's going to get back down to 0.'

And I say to her 'I hate labels, but does Vestibular Dysfunction come to mind?'

YUP! We had the best discussion after that.... why few ever see it... what might help... how frustrating it has been for me to bring these issues up for them to be passed off as 'typical'.... etc.

I can't recall our whole conversation, I just know that it was positive. She is the best listener, so good at her job, and so in tune.

Now, even though we discussed a lot today & she is pretty positive a craving for more vestibular stimulation is to blame for this display.... I just mearly want someone to entertain the idea. I want my OT to listen tomorrow as I tell her why I think we need to talk about it and I want some sort of concrete set of questions to either support or deny it's presence. I don't want to just blurt out 'I think he has Vestibular Dysfunction'.... but also a set of descriptive words won't cut it either. When I seperate all the things that make ME see it, it is always passed off as something else. So, my plan is just to tell her about today.

I think Suzanne and I are both the type of people that feel that if we have a good hunch about something, it's not going to hurt DS to try weighted belts or vests or crash pads or swinging or other types of helps. If it doesn't help, fine. We missed the boat.

I am really tired of everyone else who seems to think that their time is so invaluable that they can pass off my questions as 'oh, no no no. thats not an issue'

Ok - I do sound a little bitter. Oops. It was a really great day - despite having a hard time with DS from sunup to sundown. I hope to have more ideas to help him now. Because at the moment, when he gets like that.... there's not much I can do.

My list:

Constant marching, writing, twirling of hair, or figiting.

Cant stop to eat

Does great in the carseat when he is strapped in

Does great in the wagon, on swings

Loves rough play with Daddy

Sometimes a tight hug helps to calm him (if he can stop)

Can't lay still to take a nap

Hops all around on the floor while playing

Bumps/bruises/clumsiness

*He does stop to read/cognitive tasks*

Suzanne and I also talked about his preschool observations coming up & how things like this make me think he should qualify for preschool services - and yet everyone thinks he won't. I told her I can talk all day long, but what they see in his observation will not be what we deal with. She assured me that she would write up an encounter of this event so that it would be handy when time comes for people to advocate for him.

3.06.2009

'Hummmmmmmmmph' is the new favorite noise of DS when he doesn't want to do something, or if you give him an answer he doesn't want or if he has to wait on something. At least when he's in a good mood.

It's really adorable & 10,000 times better than screaming or 'Noooooooooooo'. So, I've been loving it. We're all culprits of imitating him just to get him to do it again it's so cute.

However, this evening as I sit catching up on a few computer things- DS is watching Curious George. Low and behold, I am listening to the TV and I hear George say 'Hummmmmmph'. The EXACT noise - not just the articulation of it, but the context as well.

I never thought I'd hear a 'noise' script, but it makes sense. You gotta give the boy some PROPS for picking up on the CONTEXT in which george uses the noise too....

3.05.2009

DS has been doing really well with SLP goals. There are still a lot of things that mommy wishes her little boy would do (speech related), but maybe they're not realistic or age appropriate... which is the problem with peer comparisons.

Jen comes today and is quite impressed with DS asking questions, varying responses, etc.. and comments that he's doing so well we're going to have to come up with new goals. And she acted stumped and asked me if there was anything else I could think of to work on and she would have to really think to come up with something. I have known for quite some time that she thinks he is 'all caught up' and working on goals above his age.

I have taken a bit of a break from 'neurosis' (Example 1 / Example 2) of constant speculation and reevaluation of how/what DS is doing - so I was tounge tied when she asked. To tell the truth, there are certainly things that still bother me, but I didn't know what they were. I don't even have a mental list right now.

Question: At age 3 - which we are only 4 months away from - what would be appropriate developmental stages of speech to have been through. Also, do you have some sort of 'list' of dev. milestones that should be reached by 3? Are there things that you know of that relate so specifically to ASD that maybe she's missing as needs IF she's not that up on 'the spectrum'?

I am totally pleased that she wants my input - I don't want this to come across as some fault of hers right now. I just feel unqualified to identify what he SHOULD be doing & so i always have this fear that if I don't know to look for it, it could go totally unnoticed b/c she doesn't dig very deep to FIND things that he needs to work on. I'm on board to do the work on my end to find answers to these questions - but I'm hoping someone will chime in and help me.

Two heads are better than one!

Oh & if your'e not an SLP, but you have some input....you're certainly welcome!

Our new OT Amy seemed really good at what she does. She jumped right in and watched DS attempt different areas of dressing/undressing and asked a lot of questions. She wrote a bunch of notes and compiled a list of goals to work on. I don't have the list yet, but she did write down that he has 0% self-help skills for dressing. So, she will start with socks, shoes, coat & we'll go from there. She said she would look at his goals again in about 8 weeks to see where he is. She also answered a lot of small questions about sensory issues I had. I wish I knew if they were GOOD answers - but she basically said if it doesn't impact him negatively in his daily living... not to worry about it becuase all toddlers are quirky and have sensory issues that bother them. (I'm talking tags, water, wind, sun, etc..)

But I was really disappointed there was no evaluation. I have been looking forward to the OT evaluation for so long and specifically talked with her about it ahead of time.

It's not her fault, I will say that. She said that there is only one evaluation allowed per year. But ALSO, since he will be sliding into the preschool program in a few months when he's 3 they will use her notes and NOT do another eval at his one year mark either 'because he most likely won't qualify for OT services'. He was evaluated in June and they gave her the whole write up on it. The frustrating part is that there was no OT at this meeting and to my knowledge there was no standardized test for OT administered. They are so secretive here in NC - it is like pulling teeth to find ANYTHING out. How can they deny a child services when they never really took a good look???

I have been wanting this eval. because I just don't beleive that his needs at 23 months were anything near his needs at 32 months. She asked ME what my concerns were, and (as Ive said about 1,000,000 times) I do have concerns, but how am I qualified to know what all the concerns SHOULD be? If I had older children, I might have a frame of reference, but he's my first.

I've found several checklists and plan to see how things go and mention stuff as we go. I just hate it b/c that's what I did with Mitzi. It just seems like PLAIN SENSE for a new therapist to have the opportunity to get HER take on his needs and do a standardized test and know where the starting point is all across the board.

I never knew what it was like to wake up to a sweet little voice telling me that I was needed. DS never did that. I never knew he was awake - he could have sat in that bed quiet as a mouse for hours and I'd have never known.

So, I walked into the room and approached the super smily little one telling me 'Hi...Hi...Hi' in the most adorable voice you've ever heard. I said 'Do you want to get down?'

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So, Why do I write this Blog anyway?

This blog is a journal of one little boy's journey on the Autism Spectrum. My hope is to journal my thoughts, my feelings, his successes in therapy, his hilarious 'sonisms', and anything else that makes him who he is. I want to be able to remember all those small successes and make a place for someone to come and read our story. Our story will inevitably change over time.

One thing that will never change is that God is in control and made him who he is. He also made me his Mommy and entrusts in me his care.